Neil Jackson

Neil is a member of PCRS Patient Reference Group, and has COPD/Emphysema as a result of the rare genetic condition Alpha-1 Antitrypsin Deficiency. He is a self-employed IT Consultant and was formerly a videogame producer for a well-known large American company, and a journalist for two hugely-successful national computer magazines. He works from home now, thanks to the internet, and regularly participates in various respiratory-related forums, online-groups, campaigns, and regulatory expert panels. Neil has represented his patient cohort for the PCRS, two national charities, NICE and the EMA, and has worked with UK MPs as part of campaigns and members' Bills in Parliament. Neil is married with two young sons, and lives in Bath, Somerset. He remains committed to helping to find a cure for Alpha-1, and helping his fellow sufferers by acting for change.

"As a patient with a respiratory condition caused by a rare genetic disease, it's often been the case in the past that I've felt a bit left out, but being involved with the PRG has meant that I've had many fantastic opportunities to advise, contribute and in some cases even steer the PCRS into truly considering the patient angle on so many levels. As well as learning many things about the issues that face heathcare professionals which I'm then able to feed back to my patient group, I feel I'm on the frontline to help these same HCPs understand how their decisions and choices affect us. Being on the PCRS PRG is one of the most important things I've done in my life and I'm proud to be involved. I'd urge any patient who has a desire to pass on their vital firsthand knowledge of their own situation, to get involved too."